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Thread: c1 break c2 fracture

  1. #21
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    That is great news! Your cousin will have good days and bad days. My daughter had a difficult time during her weaning from the vent. She wanted to breathe on her own so deperately that she became frustrated at times. Be strong for your cousin. She can do this!

  2. #22
    Glad to hear progress with your cousin, it sounds like she has had a good amount of progress so far.

    I'm a level lower than your cousin and Bill at C2/3 and nearing 25 years post injury. Life with a high SCI is a challenge, but can very much be a full life. Winter in the midwest makes it more interesting as well, but can be managed.
    C2/3 quad since February 20, 1985.

  3. #23
    Sorry for the delayed reply Heather.

    Regarding home modifications... the essentials were pouring cement for a ramp entrance into our house and widening a few doorways -- all the doors I was "expected" to need to use. That said, I can get in rooms with doorways that weren't widened, though it takes some fancy driving with my large wheelchair.

    Regarding nurses & caregivers... being "vent-dependent" I pretty much have someone around 24/7. Upon first coming home, we had about a month "grace period" where we had insurance approval for 24-hour nurses. Then it got reduced to 16-hours a day, and eventually it was reduced to 40 hours a week, which it's been for a number of years.

    Family and some paid caregivers cover all but the 40 hours of nursing coverage. I'm blessed & lucky to have five family caregivers (including my 85 & 84 year young grandparents) to help cover the hours we don't have a nurse. The more people who are involved, the more options we have, so my family members can somewhat choose to caregive when it's convenient for them (we have a fairly standard weekly schedule). That helps to prevent burnout and anyone getting too overburdened.

    Edit: I want to mention how a friend of mine has been a quad for 18+ years with her Mom as her primary caregiver, but I want to get her approval. I'm almost certain she won't mind.

    Emily's breathing progress is exciting! Please keep us updated with whatever is relevant.

    As you can see, there are lots of people on CareCure who can provide helpful thoughts and share helpful info.

    Bill
    Last edited by BillMiller823; 01-02-2010 at 06:50 AM. Reason: clarification
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  4. #24
    I am reading about your cousin. Sorry about all her injuries. So glad to hear she is breathing on her own now for longer intervals. I am sure this is a very trying time. Great posts here. I was compared to Christopher Reeves at the hospital also but I did not feel it related to me because I was incomplete lower quad. Sometimes those in charge of our care have limited understanding of SCI unless they are in a specialty hospital. So glad she is there now. The largest issues to get prepared are health insurance coverage for home healthcare. Look for Medicaid Waivers in your state, if she qualifies. These will provide more healthcare options. Prepare for the right bed for home to avoid decubitus ulcers (bed sores). My friend is on Clinitron air fluidized mattress bed. Renovations to homes and getting funding can be tricky as well. There are funds out there to help with home modifications, so if she needs anything and we can help, please post. SEnding healing thoughts her way!

  5. #25
    Quote Originally Posted by kenf View Post
    I read your website Bill , your an amazing man. You really have my respect.
    Kenf, I wasn't sure if or how I should respond to your very nice compliments, but I want you to know I appreciate the thoughts. Thank you.

    Bill Miller
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  6. #26
    Moderator jody's Avatar
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    Quote Originally Posted by trainman View Post
    Glad to hear progress with your cousin, it sounds like she has had a good amount of progress so far.

    I'm a level lower than your cousin and Bill at C2/3 and nearing 25 years post injury. Life with a high SCI is a challenge, but can very much be a full life. Winter in the midwest makes it more interesting as well, but can be managed.
    trainman you rock.

  7. #27
    Ok, my friend said it's ok to share this... she has been a C4-5 quadriplegic since 1991 -- and she has essentially had just one primary caregiver, her Mom, and they haven't had an abundance of nursing help (I think she gets 4 hours a day, when they have help). They receive government assistance and live in a relatively small apartment together and have for the last 18+ years. They both are positive people and my friend is grateful for everything, especially for her Mom's choice to caregive for her.

    So, life as a quad can be doable under just about any circumstances.

    The case manager or a social worker at RIC should be able to provide info about any assistance programs that may be able to help.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  8. #28
    Sounds like a great place so I am sure they will get the necessary info.. I'm hoping things will work out for her. I don't know who in her family could care for her but you never know what will happen.

    She breathed on her own for 16 hours yesterday!

  9. #29
    Ala- This is fabulous! Hope she keeps up the great progress! Can her family also get onto the CareCure website? I found the information and support here has been very valuable

  10. #30
    She actually went 20 1/2 hours and then was too fatigued to go further. They are letting her rest before they start again. My aunt just asked about this site so I'm sure she'll be logging on. This is a great website and the information is so helpful. I know it will be of great use to them.

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